Journals

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

S-ICD Procedure Date April 4th

Anothermike11
  • By Anothermike11 · Posted April 2, 2014
  • 25 replies
  • To all of the great people who have been so helpful with all of my questions. I go in this Friday for my S-ICD at St.Paul's in Vancouver. I will do my best to keep you all posted on how it goes and hopefully ...

Our CPVT story so far.

dhutchins
  • By dhutchins · Posted April 1, 2014
  • 2 replies
  • We recently learned that our 11 year old son Tommy has CPVT. I wanted to start by thanking all of you who are part of this group. Though you didn't know it you have been a source of information, hope ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · Posted March 14, 2014
  • 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Comatosing on eating daily ??

julieshrive
  • By julieshrive · Posted March 7, 2014
  • 1 reply
  • Could this be related to cardiac fibrillation & sleep apnea My cardiac arrest was due to poor pumping of oxygen.Now wearing a mask at night but not it is affecting the comotosing on eating ...

Side effects

julieshrive
  • By julieshrive · Posted February 20, 2014
  • 0 replies
  • How does thyroxine & statins interact as getting acute bouts of excrutiating pain & spasicity relating to chronic utis - spina bifida occulta.Mother had PMR & suspect complications masked by multi infart ...

It's my birthday, my real one

OscarTGrouch
  • By OscarTGrouch · Posted February 14, 2014
  • 25 replies
  • Today is my birthday my real one. I'm 47, I'm now officially closer to fifty than forty....lol. I hated turning 45, I thought the world was ending. I wrote about it in my journal I keep. At 45 I was closer ...

Introducing Photos for Inspire

Walter
  • By Walter · Posted February 11, 2014
  • 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

Discovering there was something wrong with my heart.

nnichi
  • By nnichi · Posted January 31, 2014
  • 7 replies
  • I am 28 years old. A mother of a 2 year old beautiful little girl. I have been having pvc's for quite a while, when all of a sudden this Saturday I had my heart beats take my breath away and felt like ...

New App in Cleveland

Luckylindy66
  • By Luckylindy66 · Posted January 26, 2014
  • 5 replies
  • This App will save lives. Now we need to get more people trained on CPR and how to use and AED and there will be more of people like us around. http://www.newsnet5.com/news/local-news/ oh-cuyahoga/pulsepoint-app-makes-its-way ...

CPVT and Flecanide

AJ-1977
  • By AJ-1977 · Posted January 23, 2014
  • 6 replies
  • Ok i have been in hospital now or a week do be taken off my beta brokers (METOPROLOL) to commence on Flecanide i started with 50mg twice a day then did a stress test that i failed miserably they then ...

Return to Where I died... Another Great Day

Luckylindy66
  • By Luckylindy66 · Posted January 14, 2014
  • 19 replies
  • This is a few months old but I felt it was important to share.... September 29, 2012 at the Akron Marathon I died after suffering from cardiac arrest. I was brought back after CPR from two runners (who ...

The Luckiest Day of My Life/One of the Best Days/Working to Save Others

Luckylindy66
  • By Luckylindy66 · Posted January 3, 2014
  • 12 replies
  • The morning of September ‎29‎, ‎2012, ‎started like all my previous ‎16‎,‎911 ‎days as I woke up before my alarm, jumped out of bed and was soon ready to take on the challenges of the day‎. ‎My first ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · Posted December 6, 2013
  • 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

CPVT and sinus pause from betablockers?

EmmaJayawardene
  • By EmmaJayawardene · Posted December 5, 2013
  • 4 replies
  • Hi everybody! Hope someone in here can help me a little bit. As I have, my son to have CPVT, and two months ago he had an operation to get an reveal recorder to monitor his heart. He has been on beta ...

Thank You, From Inspire

Walter
  • By Walter · Posted November 26, 2013
  • 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

MY 4yr old Daughter and CPVT

lifechanges
  • By lifechanges · Posted October 23, 2013
  • 2 replies
  • Hi, My daughter's genetics test finally came back after 11 weeks of waiting. She has the RYR2 CPVT gene and also mutated another gene that they found called Calsequstrin. Her Cardiologist listed her as ...

Grateful For New Friends!!

sunnym78
  • By sunnym78 · Posted October 18, 2013
  • 4 replies
  • I thank and appreciate everyone who took the time to comment on my post about the passing of my 9 yr. old son!! My son's name is Angel and I say is because my son will always be part of us no matter what ...

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